Muscular Dystrophy NSW

In June of this year, MDNSW hosted our annual Big Red Roll & Stroll at Parramatta Park. We can now confirm that this year's Big Red Roll & Stroll raised over $76,000! All funds raised will support our Peer Connect program! Peer Connect gives our community the opportunity to bond over shared experiences, whilst also providing accessible (and fun!) programs and events. Peer Connect is a powerful social group that encourages advocacy, empowerment, and of course - friendship. Thank you to every single person who participated on the day, or who donated - we couldn't do it without you. Stay tuned for when expression of interests open for 2025!

National Aboriginal and Islanders Day Observance Committee (NAIDOC) Week occurs each year in July and aims to celebrate the culture, history, and achievements of Aboriginal and Torres Strait Islander peoples. The theme of this years' NAIDOC Week - "Keep the Fire Burning!" - is an invitation to all, to stand in solidarity with our Indigenous community and help amplify the voices of those who have been previously silenced. To mark NAIDOC Week, our team joined Aunty Leanne on Dharug land to learn more about the Dharug people, their customs and their traditions. We believe it's important to educate ourselves as much as possible to gain a better understanding of not only our community, but also the community at large.

Last week our Paralympians set off for Paris to compete in their respective sports. Joining them in August is one of our own community members Jamieson Leeson who is competing Boccia this year. We couldn't be prouder to see one of our own community members representing Australia on the world stage. Speaking to the Australian Paralympic team, Jamieson said "Growing up, I didn’t have any sport available to me. In the country there’s no Para-sport let alone boccia. I would have to travel two hours to Orange and only did that a few weekends because it wasn’t a very big club.” Stories like Jamieson's are why we believe funding for programs and events is so important. Visit thttps://lnkd.in/g2jgdKBj to learn more about Jamieson's journey. Good luck to Jamieson and all our Australian Paralympians! Bring home the gold! 🥇

Early bird registrations for the “IGNITE-ENGAGE-THRIVE” Duchenne Conference Sept 16-17, are about to close. The Save Our Sons Duchenne Foundation (SOSDF) international line up of speakers is set to ignite curiosity, engage the mind, and empower the community. The conference aims to bring together community members with global experts, medical specialists and researchers. Carolyn Campbell-McLean, our very own Senior Community Support Specialist, has been liaising with SOSDF convenors to enhance inclusive opportunities for clients living with Duchenne and Becker muscular dystrophy. Be sure to visit our MDNSW booth on event day, to learn more about what it is we do and the supports we offer. To register visit https://lnkd.in/gFb_qdiU by 8 July.

EXCITING NEWS! Summer Camp is back! Our next Summer Camp will be Monday 13 January - Friday 17 January 2025 at Sydney Academy of Sport and Recreation in Narrabeen, NSW. Secure your spot now to make sure you don’t miss out! Contact our team on info@mdnsw.org.au or call (02) 9888 5711 now.

Earlier last week, MDNSW's CEO Charlotte S. attended the National Summit on Neurological Conditions in Canberra - representing both Muscular Dystrophy NSW and Muscular Dystrophy Foundation Australia. Hon Bill Shorten MP MP, Minister for the National Disability Insurance Scheme of Australia, and Senator Jordon Steele-John spoke about the importance of finding cures and improving the lives of those living with neurological and neuromuscular conditions. With a third of the population living with neurological conditions, summits such as these are important to highlight the need for equal access to assistive technology, greater investment in research, and improved support to those who live with disability.

A huge thank you to Biogen, one of our Big Red Roll & Stroll sponsors! Not only were the team kind enough to donate to our cause and support our event, they also brought out all the stops when it came to their event day stall! Check out the photos below of their special guest appearance - Zac, from their book Zac's Play Day. Once again, thank you to the Biogen team for your generous support. You partnership helps us make a difference in the lives of those living with neuromuscular conditions.

Help MDNSW create moments that matter and donate to our Tax Appeal today. Your support is vital to ensure that every family living with a neuromuscular condition can feel supported through community and connection. Donate now at https://lnkd.in/g6UG4444

For community member Peter, our peer support program Peer Connect has provided him with much-needed connection. A highlight is our Peer Connect Retreat, a chance for him and his wife to meet other people facing similar situations. We need urgent funding to support Peer Connect, a program that supports over 300 people in our community each year. For as little as $75, you can help make moments matter! Support our Peer Connect program and donate today at https://lnkd.in/g6UG4444

"A Premier League Powerchair Football player, an avid snow skier and ever a Powerchair Hockey player – it’s safe to say Fletcher’s neuromuscular condition does not hold him back." We were recently featured in Mosman Daily. Follow the link below, and click to page 7 to read the feature article about our community member Fletcher Ball and how the Big Red Roll & Stroll helped raise money for others living with neuromuscular conditions. https://lnkd.in/d8AiS6tX